Our precious little angel went to Heaven on 8 May 2001. Whilst Nick and I would never have wanted to see Gemma suffer, and even though we knew how ill she was, neither of us were prepared for the complete sadness and sense of loss that we both feel.

Since coming home from hospital on 8 March, Gemma had continued to deteriorate. We began to feel that she was uncomfortable and occasionally she would cry – a definite sign that something was wrong. Her head was swelled, and she was unable to tolerate any milk so was kept hydrated by a drip. (This in itself wasn’t easy – it was difficult to find a vein, and in the end a long line was inserted into a scalp vein – a procedure that upset Nick and I greatly, but didn’t bother Gemma in the slightest!). Gemma began on 4 hourly IV morphine and progressed to a continuous infusion of diamorphine when the morphine sulphate appeared to stop working.  Soon Gemma began to become uncomfortable again and began to wretch constantly. It was decided that if Gemma was sedated she would be more comfortable – by this time her head was extremely swelled and obviously caused her some pain.  Midazalam and Cyclizine were added to Gemma’s infusion.  After a number of increases in dose Gemma began to reach a plateau and amazingly her last week was a wonderful one.  Nick and I have some fantastic memories of Gemma’s last few days. Suddenly Gemma seemed so peaceful. We were able to spend time ‘pampering’ her like we used to do. We washed her hair; massaged her legs and she even had her nails done! Apart from the fact that her sub cut sight needed changing on a daily basis, everything else seemed to be working perfectly – even the long line that she had had in for over 6 weeks!

On the morning of 7 May 2001 Gemma began to breath very fast – over 60 breaths per minute. We tried to calm her down by letting her breath into a paper bag, and giving her some rectal diazapam, and by midday she began to calm down.  For the next few hours Gemma was extremely settled, so much so that Nick and I went to the shops for an hour to get some fresh air. Gemma had some ‘special time’ with Auntie Sue. We were not to know that this was to be Gemma’s last day and looking back I am glad of that because it meant that Gemma’s last few hours were calm, and ‘normal’, and wonderful to look back on! By afternoon Gemma’s breathing had slowed down so much that we wondered whether we should be worried about it – she had gone from one extreme to the other.

At 9 pm Gemma’s breathing again began to speed up and at 10 pm we rang Sue to express our concerns. Sue and Gill came to the house immediately.  Sue began to prepare us for the fact that Gemma may not have very long to live, but we knew that – she was breathing so fast it was a wonder she could carry on at all. This was typical of Gemma’s courage and strength of character – I’m sure anybody else would have given up within a few minutes. In fact hours passed. By 1.30 am Sue asked us if we wanted her to leave us alone. We didn’t know what to do. Gemma had been fighting for breath for over 4 hours. Sue checked Gemma’s sats. They were 69. We turned off the monitor and continued kissing and cuddling Gemma and telling her how much we all loved her. Sue had contacted the consultant earlier and the increase in morphine that he prescribed had had a good effect. Although her breathing was still as fast, she closed her eyes and relaxed into the cuddles and kisses that we gave her.

At 2.05 on 8 May 2001 Gemma took her last breath.  She was on Mummy’s knee surrounded by the love of Mummy, Daddy, Auntie Sue and Auntie Gill. 

Gemma’s funeral was held on 14 May at St Lewis RC Church, Croft. We were adamant that the service should be a celebration of Gemma’s life, and all that she achieved in such a small space of time. The children from the school sang the hymns, and the service itself was beautiful - just what Gemma would have liked. We had asked for flowers rather than donations – we felt that Gemma would have loved the bright colours and lovely smells and we were overwhelmed when we saw the array of beautiful flowers that people had kindly sent.  The church was full and we were so pleased about this – it seemed to be a fitting tribute to our little girl. We had produced an order of service for people to keep, which included the words to a poem that Gemma’s Auntie Yvonne had written.  The service ended with Phil Collins’ song “You’ll be in my heart”. We used to listen to this song with Gemma when we were in her playroom.  I think the words say it all.  A copy of the Order of service is below.

It has been 2 months now since Gemma went to Heaven.  Obviously, it has been very hard for those who loved Gemma to come to terms with the fact that she is no longer here.  However, we know that she is at peace now and is not suffering and we should get some comfort from that.  We try not to focus on the ‘sad’ things, but instead I hope will all think about Gemma’s achievements.  Nick and I will never be able to express our admiration to Gemma for her strength and courage, her beauty and her love.  She gave all of these things freely to us and we know how lucky we were to have had the privilege of those things – even for what seems, to us, like such a short time. She will live forever in our hearts.